‘Time is running out’: My fight with stage 4 breast cancer

‘We must do more for Stage 4,’ says Joanne Ryan, as she battles breast cancer for a third time

 

Born the daughter of a Galway boy and a Kildare girl, I inherited their Irish temperament – and thank God for it, as I truly believe this is what has helped me battle breast cancer for the past four years. My parents were a mixture of fiery temper, stubbornness, gentle charm, sharp wit and warmth. They taught me strength and courage, to see the funny side of life and to smile through adversity.

I was first diagnosed with aggressive Grade 3 breast cancer in October 2013. I recall breaking the devastating news to Mum and Dad. Mum’s first word’s were “We will fight the good fight,” and Dad’s gentle reassurance helped to quell the fear and calm the storm inside: “All will be well Joanne me darlin’.” I underwent a lumpectomy, followed by “Irish” chemotherapy (FEC) as we nicknamed it, then radiotherapy and believed myself cured. Just months after my all clear, my beautiful Mum, my 4ft nothing warrior woman, passed away.

In August 2016, I was diagnosed with breast cancer for a second time. It had returned with a vengeance – a 6cm tumour had developed and was growing rapidly into my chest wall. This time I found myself among the 15 per cent of women with triple negative breast cancer, ie it does not have receptors for hormones oestrogen and progesterone or the protein HER2.

Women diagnosed as Stage 4 often feel overlooked in favour of stories about people with primary, early stage, treatable breast cancers

The prognosis was dire. Triple negative tumours are often already Grade 3 and likely to keep reoccurring. At this time, my darling Dad was also tragically diagnosed with Alzheimer’s.

The Irish fighting spirit was called for once more. I didn’t have Mum or Dad beside me this time, but I recalled the words I read at the end of her funeral and what she would have told me: “Open your eyes each morning, smile, love, and go on.” With my fiance Andrew by my side, and the support of my extended Irish family and friends, cancer didn’t stand a chance!

Mastectomy

I had a second round of chemo (with all the glamorous side effects) but minimal response. Told I would need a radical mastectomy, I decided I was more than my breasts. I had the op, achieving a “No evidence of disease” result – hardly able to believe we had defeated cancer a second time.

Sure enough, just six weeks later (and barely coming to terms with the loss of my breast) the CT scan showed the cancer had already spread to my lung. I was told I was Stage 4 – meaning there was no longer a cure. I felt I had been handed a death sentence and cannot quite express in words what a frightening and lonely place a Stage 4 diagnosis takes you too. I felt for the first time in my life that all hope was lost.

Women diagnosed as Stage 4 often feel overlooked in favour of stories about people with primary, early stage, treatable breast cancers. The media tends to cover the Pink Ribbon and the Race for Life campaigns and the happy outcomes. However, this hides the bigger picture, which is that a large proportion of primary breast cancer patients go on to develop secondary breast cancer, sometimes years after their original diagnosis. It’s metastatic breast cancer – cancer that has spread from the breast to other parts of the body – that kills. In the UK alone, some 12,000 people die of this disease every year.

I was determined to prove what Mum and Dad had always shown me: that love is stronger than cancer

My initial reaction to the Stage 4 diagnosis was “I am going to die”. Andy and I returned home from the hospital, terrified. We sat enfolded in one another’s arms, and sobbed for hours. When he had gone to bed, I sat alone and started to plan my funeral. As dawn broke, I looked at my photo of Mum and Dad and decided: “If life gives you reasons to cry, find 10 more reasons to smile!”

My only regret was not being married to the incredible man who has stood beside me on this journey. I arranged a simple wedding to Andrew in just two days. In tribute to my Irish heritage, I wore a pale blue dress, something also in keeping with the custom “something old, something new, something borrowed, something blue”. It was so important that we experienced our “happy ever after moment”, and I was determined to prove what Mum and Dad had always shown me: that love is stronger than cancer.

Joanne and Andrew on their wedding day. ‘In tribute to my Irish heritage, I wore a pale blue dress, in keeping with the custom, something old, something new, something borrowed, something blue’.
Joanne and Andrew on their wedding day. ‘In tribute to my Irish heritage, I wore a pale blue dress, in keeping with the custom, something old, something new, something borrowed, something blue’.

Scientific papers

After my wedding, and still refusing to believe the Stage 4 diagnosis, I researched, reading countless scientific papers into the early hours of the morning and sought a second opinion. Many of us triple-negative patients can be prescribed drug therapies, with dramatic results. But for others like me, time is running out.

I am now trying to raise money for potentially life-saving Gamma Knife treatment, which is not funded by the British NHS, for myself and other women in the same situation. This is despite the fact more than £9 million (€10.4 million) has been spent buying the technology and 11 hospitals offer the treatment. The funding is currently only available for brain and primary lung tumours, meaning breast cancer patients do not qualify. This technology, which is noninvasive and delivers high-dose, targeted radiation, is now our only chance of extending our lives.

I can still hear Mum saying: “Joanne Kathleen Bernadette Ryan, you remember, it’s time enough to bid the devil good morning when you meet him.” As a daughter of Ireland, I promise you Mum, if I have anything to do with it, that won’t be any time soon!

If you feel able to share our story or make a donation, we would be eternally grateful: justgiving.com/crowdfunding/joanne-ryan

PANEL: About Joanne . . . in her own words
I was born here in Swindon, Wiltshire, after Mum and Dad met in the late 1960s at an Irish Dance, held at the Town Hall.

I attended St Joseph’s Catholic School, passing my A-levels. I then had a break from education, moved to Marlow in Berkshire, and enjoyed a 10-year career in marketing and advertising. I didn’t find that particularly fulfilling, so I travelled the world (fulfilling a childhood dream to meet a Massai warrior in Africa) and decided to return to study.

I applied and was accepted to study English at Oxford (despite growing up on a council estate, Mum and Dad always had high expectations for me). I then trained to teach, working with young children in a specialist dyslexia unit in Oxford, before returning home to Swindon.

I taught English at New College for five years. However, when I was diagnosed with cancer for the first time in October 2013, due to the risk of infection during chemotherapy, I was unable to be among members of the public (especially over winter).

I was so bored at home (there is only so much Jeremy Kyle a girl can stand). To keep myself occupied, taught myself to up-cycle vintage and retro pieces of furniture.

I was determined that something good would come from something bad, and actually started my own business during this time, creating bespoke pieces. My beautiful Mum came up with the name: “The Bees Knees”.

The Bees Knees took off, and we started attending and selling at vintage and retro fairs. I developed a website as well. So, cancer helped me to discover a creative side I never knew I had!

I still tutor, having worked with young offenders to improve their literacy skills, and adult learners returning to education, and now feel I have the best of both worlds.

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